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Author
Topic: So here it goes (Read 7335 times)

I had risky sex early June but had to wait until later that month to get tested. They drew blood and tested it for antibodies. I got the results a week later saying it came out negative. A few days later I received another call (July 6) saying that my blood tested RNA positive, with a viral load of 10,000. I went in for a second time so they could draw more blood and I found out today that I tested positive via IFA. As expected, I am going through a flurry of emotions. All of these what ifs, would'ves, should'ves and could'ves overcome me. I feel so much regret. A part of me doesn't want to believe it. I have become so disconnected in that I never thought I would be infected. As silly as it sounds, I am just waiting for them to call me back, saying that it was all a mistake. I don't want to come off being a whiny baby. I knew what I have done in the past was risky and down the line, I would have to pay a certain price and face the consequences. But I didn't know that I would have to pay it now. I thought I had my whole life ahead of me; I was inspired by the almost limitless possibilities. But now, I fear that I won't be able to accomplish everything that I have set out to do.

I don't know what to do from here on out. The first that came to my mind was that I was going to die. Still being young, I was naive to ever think about my own mortality. But the past week has changed everything. Yes, I know that everyone dies, but I cannot shake the feeling that I will die a sooner, painful and uncomfortable death. I don't want to suffer during the last years I have left. But most of all, I don't want to put my friends and family through an unecessary burden. I don't know how much of a normal life I can live. I am just absolutely numb -- I am emotionally spent and distant. I was so foolish to think that I would never get infected, that some how, I would be the lucky one in dodging the bullet.

People say that HIV/AIDS is manageable, that it is a chronic condition that has to be taken care of for the rest of your life. But the thing it, I also suffer from depression/bipolar disorder and already know what is means to keep this condition "under control." Imagining juggling doctors visits, appointments and taking HIV medication in addition to my antidepressants is absolutely daunting. I fear that I don't have what it takes to simply move on. I know it may take months, maybe even years, before I come to peace with my condition. I am fighting the urge to withdraw and lock myself in a room until everything blows over. While I was awaiting my results, I spent the week going online and researching everything I could on HIV infection. All these terms and medical jargon intimidate me. I don't want to be prodded, poked and studied as if I were an animal. I feel that I have been stripped of my humanity. On the bus ride home, I fought the urge to plan to take my own life. It sounds juvenile, yes I know, but I feel that my options are limited. I am so scared for my life, fearing the quality of it has dropped dramactically. I haven't seen my therapist for well over a month -- and I am scared to even tell him about it, even though I know he probably be the most supportive at this point. I fear that in being positive, I will never be able to be close to someone. I already have a hard enough time trying to go out and socialize. I have always felt disconnected from people growing up, and now it will be even harder to do so.

I still hope that it the results were false positives. I really do. But I know that it is not the case, and that...I will just have to move on. I am not a religious person, but I did ask and pray to God, my grandmother and my late father for strength and forgiveness. I don't know if I ever can ever forgive myself. I know I won't be the same person ever again.

Read your other post as well. I understand how overwhelmed you must feel with the shock of this new news. I have been diabetic since age 11 and on insulin. I am 37 and have been poz for 13 years now. I know the struggle of juggling docs appts. I go to my ID doc, my PCP and my diabetic doc. I am going to a chiropractor and a massage therapist to help nurse a bad neck and back. I had a female scare in May and had to have a bunch of tests run. I have had a lot of MRIs done to check on my back and neck. It NEVER seems to end. I get overwhelmed by the appts, but I tell myself that its my JOB to take care of myself now, and to fight this battle. The good thing is, YES, HIV IS chronic, its easier to manage than my diabetes and the frikkin insulin pump I am on! I remember getting my diagnosis in December 93, three days before Christmas. My doc told me the news and I said, "This couldn't have happened to a better person. I won't let this get me." ....and so I haven't. It may sound strange, but already being on meds and visiting docs for other conditions actually prepared me to live with being poz. I was already used to schedules, regimens and routines. Imagine if you had a clean bill of health and THEN tested poz? You would be going from one extreme to the other, which in my opinion, would be more of a shock. I understand that you want to lock yourself away from the world right now, and if you need to vent, cry, scream, I think its healthy to do so. Its all quite normal and sure feels a hell of a lot better than holding it all inside. Remember though, that only YOU can take the steps to take care of yourself. There are so many meds out there for HIV! Yes, it sucks to have the virus but you owe it to yourself to take advantage of all of the possibilities with meds. Go to your doc on a regular basis and remember to wrap that rascal! Hey, look at my counts posted here at the bottom. Just got them back today. Even my thyroid and cholesterol as well as the dreaded blood sugar have improved. All I have done is eat junk food while being unemployed for 2 months, but I have exercised and cleared my head.

Take the challenge to take good care of yourself. Its NOT the end of the world, and you have plenty of people here you can turn to for support!

hello cali.... i was diagnosed in feb. of this year and just recently i have been able to say hey.... i made a mistake and wasnt careful but ohh well its said and done...... but my life isn't done.... its time to live how i should have done in first place and not let this bring me down.... you seem to be a person that can overcome this... so be strong and know u have friends on here... to talk to whenever

God, I am still numb. I am sitting in the kitchen thinking about to do with the rest of my day. I am trying to keep as normal a routine as I possibly can. But sometimes I think what is the use. I try to tell myself that I am the same person, but I can't bring myself to look into the mirror anymore. I am filled with so much regret, so many should'ves. I fear that being infected will get in the way of life. There are still so many things I want to accomplish and I don't think I can do it anymore after getting infected. I feel I have to reasses everything now. I am filled with so much doubt.

But I am worried about getting infected so young. I keep thinking that the virus will have more time to deplete my immune system, leaving me vulnerable as I grow up. I am also worried that as time goes on, I will become more and more resistant to the different classes of medications.

People say that HIV/AIDS is manageable, that it is a chronic condition that has to be taken care of for the rest of your life. But the thing it, I also suffer from depression/bipolar disorder and already know what is means to keep this condition "under control." Imagining juggling doctors visits, appointments and taking HIV medication in addition to my antidepressants is absolutely daunting. I fear that I don't have what it takes to simply move on. I know it may take months, maybe even years, before I come to peace with my condition.

Honey,

Actually a few of our members here are also managing serious psychiatric conditions like bipolar disorder along with their HIV. I myself also have to deal with grand mal epilepsy as well as AIDS. It makes getting the right medication combos interesting to say the least.

The nifty thing with a condition like HIV is that it's not going to go away and so in the end, you have to deal with it in some form or another. Most of us manage that with a fair degree of success. If you've been managing a serious condition like bipolar, then you've already go what it takes to deal with HIV infection.

Naturally the key to this is having good communication with and between your medical people. Your HIV doctor is going to have to talk to your psychiatrist and your GP and vice versa. They've all gotta be singing off the same page and it's your job to ensure that they all know what's going on.

Don't expect to be able to deal with everything that HIV throws your way straight off. It takes time to "learn the ropes" so to speak, but I'm confident that you can do it.

Reaction to an HIV result is different for everyone, over time you will find a way of dealing with this and in a way that will suit you, thousands of people are living well despite their HIV diagnosis, you can do it too but you have to take control.

No one here will tell you this is going to be easy, the first couple of months will be the hardest, you will need time and space to think about your situation, whatever you are going through now is natural so it's OK to be angry and confused.

HIV can bring on stress and anxiety, but one way of getting through this is by learning about your situation, gaining confidence in it and making informed choices for your future, it's also very important to get a good ID doctor that you feel comfortable with and can trust, and talk to friends that you can trust, getting support is also very important, don't try and do this on your own, of course you will always have the support from everyone here so don't be afraid to voice your concerns or worries.

Remember that being HIV+ does not stop you from being the person you were before you had your results.

I want to thank all of you who have posted. I am trying to build a secure support network in hopes that it will better acclimate me to this new situation. I try to tell myself that things will get better, that it is just going to take time. But damn, this is hard. I want to think that I have what it takes to get through this initial period, but I have no idea what lies ahead, but I suppose, none of us do eh?

hi caliwell, im sorry to welcome you to this club, but youre in a good place here so hopefully we can all help you through what will be a difficult time for you. you seem pretty sensible and that will be a great strength to get you through this learning curve in your life please keep in touch. stay strong. xxxx

"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

As you'll discover understanding your blood test results is all about understanding trends over time. Especially early in one's infection. When you meet with your doctor(s) for your first real HIV consultation a full blood work up will be done, covering not just VL and CD4 counts but a range of other things as well.

The VL result you received from that "diagnostic" PCR really doesn't mean anything at this stage. Now that your diagnosis is confirmed it's best to start with a clean slate.

Another thing you can do is when you receive results is post them in the Living With forum. Many of us have a lot of experience with these things and you can receive great advice and informative insights from your positive brothers and sisters here.

sorry to hear about your diagnosis.....I remember when I was first diagnosed in February of 2006 I thought I was going to die within a few months........here it is 1 and 1/2 years after being diagnosed and I'm in a better place then I ever was before.

It will take time, but you can't live in fear and you have to accept that this is a new chapter in your life. For me having HIV just helped me find out about myself sooner. I've now taken steps to make sure I'm healthly and truly living life and not just going through 'half-alive' or just enduring life.

You've done the right thing by reading as much as you can and getting informed. Coming to the forum is a great first step.

If you have any questions there is a plethora of people here who care and really will listen and help you.

Just wondering, is a VL of 10,000 good considering that I was infected early June? I don't know my CD4 count, yet.

Hi Cali,

You need to know that your viral load will most likely go up before it starts to come down. Your RNA PCR was done at a very early stage of infection and I wouldn't want you to be surprised - or frightened - by a viral load increase with your next set of labs. An increase at this point would be totally consistent with primary hiv infection, but it will start to go down on it's own, given time.

It can take months before your numbers stabilize so patience will be needed on your part. All you can really do right now is try to eat right and get plenty of rest so your body has the means to deal with your hiv.

If you haven't already, you might want to read through the Living Forum's Welcome Thread where you'll find links to other sections of this website.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I want to thank all of you for your heart felt responses. I am trying my best now to cope with the situation. I realize that this will mark a new chapter in my life, and in order to move on, I need to let go of the regret. Nothing is promised to us...nothing. But I have no choice but to deal with that situation as it stands and simply move on. There is just so much stigma around HIV and I fear I have internalized most of it. I will probably have to re-learn everything about it but more importantly, about myself. Finding out I was positive reminded me that we are all mortal and that eventually, our time will be up. This was a big change from the youthful exuberance and arrogance about life. I need to reasses all of my goals and priorities now. I want to make the time I have left meaningful and fulfilling. I feel that I have grown so much in the past week. But at what cost? Heh, I liken this experience as a second loss of innocence. We are not invulnerable, and I am now fully aware of it. It just sucks that it takes getting infected to realize all this now.

Now what? I am going into the clinic this Monday and picking up hard copies of my results. I am still so deathly afraid of telling even my closest friends, fearing their judgment and their eventual abandonment. I fear that they will tell other people, and that these people will make judgments and criticisms simply of the fact that I am positive. But I guess, knowing all that I know now, will it matter? Life is too short to sweat the small stuff. But blah! I can't muster up the strength to tell anyone, even though I know that it will help me deal with the situation just that much more.

Don't worry too much about disclosure right now. Go to the doctor's, get your labs done, discuss treatment options, etc. You'll be in a better position to discuss your infection armed with knowledge, and eventually you'll figure out whom to tell and for what reasons.

Brent(Who sweats the small things sometimes, too)

Logged

Blessed with brains, talent and gorgeous tits.

The revolutionary smart set reads The Spin Cycle at least once every day.

Cali - It's a roller coaster ride, isn't it? It will smooth out to be sure. Most folks don't need treatment for quite a while, so after the initial shock, maybe you will be able to put HIV on the "back burner" for a while. I think you'll do great, you seem to be very thoughtful and organized in your thoughts. You'll manage this fine.

PS - Real friends don't abandon each other when the going gets tough. Nor will we.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

i just want to echo everything that the others have said, it is all sage advice.

the thing about numbers is that although they can be used in seeing trends over time you do not want to get too hung up on them at this stage. you are in a very good position in that because you know your status almost from word go you will have stats from word go, including seroconversion, which is a good position to be in for monitoring.

the bad thing about this is that during seroconversion your viral load will be high and your cd4 low, which is very scary. over time though the vl will most likely fall and the cd4 recover somewhat. this will take i wouls say at least 6 months, so it is too early to really be able to judge anything from your numbers.

you may hear conflicting views on whether meds should be started immediately or not, and all i can say is to try to not let the information overwhelm you. your doctor needs to be someone you trust and are comfortable with so hopefully you will have a good experience on monday when you go. try to have a list of practical questions that you want answered, but dont try to find out everything all at once now, there is just so much information out there and you have plenty of time to take it easy and find out bit by bit - all you need to concentrate on now is the stuff that affects you now. if you do decide to get information from sources other than your doctor only refer to reputable and up to date information sources such as this site, thebody.com, aidsmap.com.

as far as disclosure goes it is a difficult one and something that everyone handles differently. just remember that once said you cannot take it back, so if you have your doubts about telling someone maybe wait a while. there are many many people out there who will react with nothing but love and support, and these friends are the people who you will want in your life. i advocate disclosure as the way to change the misinformation and prejudice that is in the world, but some people do not feel that they are in a situation where disclosure would be safe - we each have our own situation. luckily for me i have lots of open-minded fluffy liberal friends so it wasnt too difficult a decision to take. hopefully you will be in the same position.

the thing is, that you dont have to tell anyone anything, and you can take your time if you want. friends can be a great support, but if you dont feel ready to tell them then that's ok too. you would also do well to seek out as many support services/groups/orgs as possible as it is really a huge help to be able to sit in a room with people where everyone is positive or affected by this in some way. and you will find strength and inspiration in others. these forums are a great help to me in that they stop me feeling like a complete alien, it's good to know youre not alone.

im glad you seem to be making a lot of sense, im sure you will handle this change in your life fine, and learn the lessons it can bring.

all the best for the appt tomorrow and keep us updated.xxx

ps. an aside - i told virtually anyone and everyone while drunk every time i went out, which is probably not the best plan (but still i havent had a bad reaction!) so i would advise that if you think there is a danger of you telling people while drunk that otherwise you wouldnt have, then maybe dont go out drinking for a while.

"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

i am going through the same emotions and thoughts tht you are going through. i was recently diagnosed positive for hiv, within the last couple weeks. i get so overwhlemed at times and have been trying to surround myself with friends and family even though in the back of my head, all i can think of is "i have hiv/ i am hiv positive". i haven't told anyone and don't think i have the courage to tell anyone. i feel like this is the worst nightmare that i'm going to have to live for however long that is. i question everything i'm doing now... is there a purpose? how will my story unravel? how will the truth eventually surface to everyone i care for? i can't hide out forever.

but i look at what everyone is telling you and me, and i have to believe that life does go on and we can make the most of it. i'm still not 100% convinced that i won't be going through the multitude of emotions tomorrow or the next day or the next few years after. i'm so scared but we just have to talk. i don't have anyone else to share my story with other than you and the other people on this site... i'm hoping that changes and i won't feel shame from the stigma of this disease. but we have to keep going because we are still alive.

i'm in california... are you too? i wanted to join a support group if you were interested in researching some around LA. take care and many blessings

Do any of you feel that a part of you died when you found out that you were positive? I can't listen to the same music or think about past experiences without being harshly reminded that I am positive. I am feel somewhat different, and not quite the same anymore. I question my thoughts, my emotions and my future. I still can't look at myself in the mirror anymore. It is a second loss of innocence. At this point, I have to accept responsibility for my actions, past and present, and now plan for my future. No one else is going to do it. Today, on my 21st birthday, I value relationships and day to day experience so much more. I am changing emotionally and behaviorally -- and for the better, I suppose. I feel there is no turning back now. Testing positive has forced me to re-evaluate EVERYTHING, which is more or less a good thing. But I am still trapped in the same routine and depressive cycle that has characterized my life prior. I know I am still the same person, with the same goals and ambition. But I am not quite the same person that I thought I had known.

Do any of you feel that a part of you died when you found out that you were positive? I can't listen to the same music or think about past experiences without being harshly reminded that I am positive. I am feel somewhat different, and not quite the same anymore. I question my thoughts, my emotions and my future. I still can't look at myself in the mirror anymore. It is a second loss of innocence. At this point, I have to accept responsibility for my actions, past and present, and now plan for my future. No one else is going to do it. Today, on my 21st birthday, I value relationships and day to day experience so much more. I am changing emotionally and behaviorally -- and for the better, I suppose. I feel there is no turning back now. Testing positive has forced me to re-evaluate EVERYTHING, which is more or less a good thing. But I am still trapped in the same routine and depressive cycle that has characterized my life prior. I know I am still the same person, with the same goals and ambition. But I am not quite the same person that I thought I had known.

Thank you all.

I felt like i had died once i was diagnosed, not everybody feel same way but i did. This might sound too scientific but it is sort of normal reaction and it usually happens to patients diagnosed with non curable diseases or terminal ones (which is not our case), they somehow develop cognositive/psychological disorders, like feeling you are someone else... fears to many things, look at the mirror and seeing you but that you are not there, depression and so on.

As a four months diagnosed i can tell that it goes away after some time... Right now i am back to be and FEEL like i am the same person again, slowly things were coming back to the right place. I know i am poz, but it is just one more thing i am poz same like i am latin, good dancer, good swimmer and stuff like that, it is just one more thing in my life.

I still think about it often (not as often as before) and speak about it often and write about it often... but i don't fear anymore... i have found peace inside myself, with the world around me and my destiny... i guess that's what helps you to keep on going... finding peace so you know you can still make things work.

I know this is hard... but you know, perhaps you should think about taking a break.... going out, to the country side or somewhere you like with friends and family... it helps. Once you are back in town you will find us here for you.

Today, on my 21st birthday, I value relationships and day to day experience so much more.

Calikid,

That is one of the gains that came to me from testing positive. No longer do I take anything or anyone for granted. I realise that tomorrow isn’t guaranteed so it’s best not to waste today. Of course it never was anyway, but testing positive brought that into my awareness with greater significance.

The only part of me that died after testing positive was stuff that wasn’t good for me, like being trapped in an endless cycle of working and drinking too much. I actually gained a sense of self respect that was missing prior to my diagnosis. Weird huh?

It’s a little awkward and bittersweet to say it, but I hope you will enjoy your birthday today (at least in part).

Does anyone know how to meet other positive individuals, other than support groups? I would prefer someone around my age (early to mid-twenties) and in the Bay Area. You would think that being in San Francisco it would be easy to meet other similar people.

Also, do any of you know any support groups for HIV-positive people of color? I was looking at the API Wellness Center in San Francisco, but I am open to your suggestions.

i cant comment on how to meet other pozzies outside of support groups in SF but you may want to check out a certain gathering of rather fabulous people visiting in september...http://forums.poz.com/index.php?board=12.0

"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

we all know how you feel right now... i tested poz on the 21st May 2007... and I was shocked.. extremely shocked... because I always did safer sex... but then... there we go.

As doc told me... I could not believe... I was not feeling like dying at that moment... but more I was just "can you say it again please" and "what's the hell is going on here"... in such kind of mood. I was thinking of a bad joke... so I did the test all over 4 times... but ok, one day it will become ridiculous if you don't accept it.

Well, the main thing which made (and probably sometimes still makes me) worrying, was the fact that my dreams and all the things I built up in life was shattered like a glass. And then there are the thoughts about my family... they love me so much... I don't want to hurt them by dying ealier. And somehow I still feel that time is running away... to fast... probably because now I really realize that everybody has to die one day.

Well, I am not sure if I will be ever the Billy as I was... my character and personality changed a bit... maybe also the view of life... but I guess it's too early to say that I will never be the same as before.

Anyways... after 3-4 desperate weeks... I was thinking... life cannot continue like this... being depressed... if so, why to live? Just try to get back to life... every single minute is precious... And believe me... I will do anything to keep me up... nobody will destroy me... and I will fight my future... although I know it is a very tough (mental) way.

Actually I just want to let you know that in the beginning things look extremely bad and you feel helpless... by time you will feel stronger and you will find your own way how to cope with this. It will take time... and take your time.

Reaction to an HIV result is different for everyone, over time you will find a way of dealing with this and in a way that will suit you, thousands of people are living well despite their HIV diagnosis, you can do it too but you have to take control.

No one here will tell you this is going to be easy, the first couple of months will be the hardest, you will need time and space to think about your situation, whatever you are going through now is natural so it's OK to be angry and confused.

HIV can bring on stress and anxiety, but one way of getting through this is by learning about your situation, gaining confidence in it and making informed choices for your future, it's also very important to get a good ID doctor that you feel comfortable with and can trust, and talk to friends that you can trust, getting support is also very important, don't try and do this on your own, of course you will always have the support from everyone here so don't be afraid to voice your concerns or worries.

Remember that being HIV+ does not stop you from being the person you were before you had your results.

HugsJan

i was diagnosed on april 5th, i also have been having alot of ups and downs i was told is normal, and for the most part i think i am doing ok with it , bit i still have my down days, i also suffer from depression and anxiety.but the best tool we have is staying positive we can not undo what we did, we can only live and learn, please keep your head up , you have alot in life to look forward to

Cal, I just want to say that you're doing really well in dealing with this new reality in your life. As others have said it does take time to get adjusted. It's especially important to establish a good working partnership with your doctor. That's one of the best tools for keeping you healthy.

As for you being so young and HIV+, you will benefit from the new treatments which will continue to come along. I can tell you that the developments in the past decade have been enormous in making a difference. Are they perfect? No. But they have made a huge difference in longevity and quality of life for many. And there's every reason to believe more and better treatments will be coming along.

In the meantime you have the right idea about reaching out to others in your area. SF and surrounding area is rich in HIV-related organizations, including some of the members of this site. Just keep yourself open to possibilities.

It's unfortunate that you need to be here, but you are so now we're glad to be here for you. And you being here for everyone else as well.

Once again, a big THANK YOU for everyone's support. The worst has since passed and I am slowly adjusting to this new life with HIV. I recently went in for my first blood work analysis and am now currently awaiting the results. I was nervous at first, not fully knowing what to expect, but the staff at the API Wellness Center were more than supportive. I know I can do this.